Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 27, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 27, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 27, 2024

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
Did you miss Clinical Trials 101: Common Myths and Facts – find it at https://ancan.org/webinar-clinical-trials-101-common-myths-and-facts/
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Join our other free and drop in groups:

Editor’s Pick: Age 50 with BRCA2 — surgery or radiation? and what about PARPi?

Topics Discussed
Newly diagnosed with BRCA2 mutation at age 50, extracapular extension and seminal vesicle invasion – surgery or radiation? PARP inhibitor upfront?; nomograms don’t account for mutations; didn’t love daro, but he’ll give it a second chance; after radiation, recurrence in the prostate but no metastasis — brachy or cryo next?; a new treatment puts an enzalutamide right into the prostate; after 1 1/2 years of monthly Xgeva, time to get off?; Pluvicto was working, so he skipped the last two treatments; insurance coverage for a second Pluvicto treatment; computer failure sends his hospital back to paper and pencil — but he gets his Orgovyx; psst – Dr. Elisabeth Heath plans a move to Mayo; PSA of 3.75 after radiation seems really high — but we’ve seen it take years to drop; doc suggesting a holiday from his abi monotherapy; taper off prednisone slowly and carefully, monitoring blood; for estradiol questions, check out our discussion video with Richard Wassersug.
Chat Log
Darren Chervitz · 6:49 PM
Thanks for listening and for all the incredible information!
Unknown · 7:02 PM
Change of plans, I have no need for time today. Recent Provenge cause pulmonary embolism took about 4 weeks before showing improvement, moderate improvement now. Latest PSA (8-22) trended down to 0.48.
Larry Schuller · 7:05 PM
The conventional wisdom about surgery after radiation is that surgery on tissues that have been damaged by radiation is problematic and most surgeons will try to avoid it.
Larry Schuller · 7:06 PM
Localized ablation is another matter.
Unknown · 7:06 PM
Larry S. – that was the ‘old’ wisdom. It really is no longer.
Larry Schuller · 7:08 PM
Rick, I would LOVE to see that research. I had prostatectomy and am recommended salvage radiation but expect to have future surgeries and am concerned about those.
Unknown · 7:10 PM
No recommendations on avoiding blood clots side effects. Dr stated that he has many patients who have had Provenge and that I am the only patient to report blood clots.
Len Sierra · 7:13 PM
Larry Schuller, there are now surgeions who specialize in post-RT prostatectomy. Dr. Eastham at MSK is one that I know of.
Larry Schuller · 7:14 PM
But is post-radiation surgery common outside of those specialists?
Len Sierra · 7:15 PM
Not sure, probably not common.
Jim Marshall, Alexandria, VA · 7:36 PM
Cookies, to me, are a better choice to donuts. always a nice touch. Jim M
Steve Roux, MI · 7:47 PM
The order I called in to the bakery included 1/2 dozen scones too. Almost like a giant cookie?
Kirt Schaper · 7:52 PM
i have to go, thanks all
Jim Marshall, Alexandria, VA · 7:56 PM
No more worrying about turning 80 an dno longer to worry abouit dying young. Jim
John A · 7:56 PM
🎉
dan, alexandria · 7:58 PM
🏆
GARY Z · 7:58 PM
Thank you, everyone!
AnCan – rick · 7:58 PM
🎆
Steve Roux, MI · 7:59 PM
that’s a sparkler
Low/Intermediate PCa Video Chat, Aug 26, 2024

Low/Intermediate PCa Video Chat, Aug 26, 2024

Low/Intermediate PCa Video Chat, Aug 26, 2024

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.

WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.

Join our other free and drop in groups:
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!

Editor’s Pick: Leverage second opinions when in decision making mode (bj)

Topics Discussed

Following PSA levels after prostatectomy — how low, how fast, how often; understanding undetectable PSA following surgery; newly diagnosed seeks second opinion; active surveillance; getting the most out of in-person medical conferences; focal vs definitive treatment; germline (inherited mutation) testing and the Promise Study; Post radiation urinary issues — irritation and flow; managing symptoms of long covid during radiation treatment; importance of getting a second opinion from a prostate cancer center of excellence; attending PCRI conference — visit AnCan

Chat Log

Boykin Jordan (DC Metro)
A lot of fun!

Jerry Grimes, Brighton, MI
Oops, I had the wrong meeting!  All the best, and I’ll show myself out…  😊

AnCan – rick
Trends in Active Surveillance for Men With Intermediate-Risk Prostate Cancer   https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2822716

AnCan Barniskis Room
This Weds 7:30 pm PT Kelly Spillman a comedian who does a stand-up comedy routine about living with cancer will perform online at ANCAN Solo Arts Heal. Please share this if you know someone dealing with cancer. Kelly Spillman is a psychology professor, stand-up comedian and storyteller based in Los Angeles. Kelly has performed at The Comedy Store, The Improv and many comedy festivals around the country. She is currently touring her solo show I Blame Florida which is a humorous, hopeful show about her quest to beat her stage 4 colon cancer diagnosis. To Watch: Click On :https://themarsh.org/soloartsheal/ Scroll down to mid-page where you can click to view in Zoom or YouTube

AnCan – rick
Promise study https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar

AnCan – rick
Darryl – here’s our phone number to dial in 646 749 3129   #222 583 973

Jim Stewart   Reno, NV
have to sign off to get grandkids, goodnight everyone

AnCan – rick
Is he new??

AnCan – rick
ancan.org

AnCan – rick
NCI Centers  http://www.cancer.gov/research/nci-role/cancer-centers/find

AnCan – rick
NCCN http://www.nccn.org/members/network.aspx

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 27, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 19, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 19, 2024 

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
Did you miss Clinical Trials 101: Common Myths and Facts – find it at https://ancan.org/webinar-clinical-trials-101-common-myths-and-facts/
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Join our other free and drop in groups:
Editor’s Pick: AnCan loses one Kwon patient and gains another – not for too long we hope! (rd)
Topics Discussed
Newbie treated sub-SoC by Kwon; switching docs; this man switched care and is MUCH happier; upgraded post surgical pathology may impact salvage RT; serious RT bone damage from salvage RT is a first for AnCan; making PCRI reservations can be confusing; this man had micro-Mx and waited on Tx; RIP Kwon patient, Les S; RT and osteonecrosis; expanding AnCan Vets programming
Chat Log
  • AnCan – rick

    sent: 5:14 PM

    🎂

  • Len Sierra

    sent: 5:52 PM

    Go to NCCN.org and look for patient guidelines for advanced prostate cancer

  • AnCan – rick

    sent: 5:56 PM

    Here’s the link for NCCN Adv Guidelines https://www.nccn.org/patients/guidelines/content/PDF/prostate-advanced-patient.pdf

  • Dr Jeff

    sent: 5:59 PM

    Sorry but I have to drop off early tonite

  • AnCan – rick

    sent: 6:03 PM

    👍♥️😎

  • david opp

    sent: 6:17 PM

    No, I have relatives in Washington and Oregon

  • Richard Tolbert

    sent: 6:19 PM

    Great session men. I have to leave.

  • AnCan – rick

    sent: 6:48 PM

    https://www.inspire.com/groups/us-too-prostate-cancer/

  • Alfredo in Houston, TX

    sent: 6:50 PM

    thank you gentlemen!

  • Julian – Houston

    sent: 6:51 PM

    Great discussion as always!!!

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 27, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 13, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 13, 2024

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
Did you miss Clinical Trials 101: Common Myths and Facts – find it at https://ancan.org/webinar-clinical-trials-101-common-myths-and-facts/
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Join our other free and drop in groups:
Editor’s Pick: Exercising when it even hurts to walk; building muscle without T (bn)
Topics Discussed
Those blahs weren’t Xtandi — they were Covid!; muscle mass without testosterone — not an exercise in futility; “Mr Hot Flash” is doing pretty well on Orgovyx; at age 59, “head-to-toe bones mets” and PSA of 1,440; PSMA scan isn’t enough before Pluvicto — get a recent somatic test; with the mets, it hurts so damn much to walk — how to exercise?; denosumab has an edge over Zometa for bone health, and Zometa monthly is too much; coming off second drug holiday, discouraging news — ; recurrence suggests he’s “castrate resistant” even though he’s getting no ADT; radium instead of Pluvicto for bone-only mets?; the new “Mr Hot Flash” learns about Embr Watch; a two-fer radiation will get both his prostate and the met on his pelvic bone; mixed feelings on rectal spacers for radiation; Dr. Chuck Ryan now at Sloan Kettering, soon accepting new patient; why all this trial information from Merck on Facebook?
Chat Log
AnCan  – rick · 6:25 PM
ACSM trainer finder….. look for Certified Cancer Exercise Trainer  https://certification2.acsm.org/profinder?_ga=2.139239987.1600007473.1525799292-1759941655.1523997371
AnCan  – rick · 6:27 PM
http://medafit.org   Medafit
Richard Fiske · 6:30 PM
Must leave.  Thanks.
Unknown · 6:33 PM
It’s called High Intensity Weight Training (HIT)
Unknown · 6:36 PM
Also called Superslow Weight Training
AnCan  – rick · 7:26 PM
Embr watch  https://embrlabs.com/
Low/Intermediate PCa Video Chat, Aug 12, 2024

Low/Intermediate PCa Video Chat, Aug 12, 2024

Low/Intermediate PCa Video Chat, Aug 12, 2024

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.

WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.

If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/

Join our other free and drop in groups- Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/    Veterans Healthcare Navigation… 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/   Next Men Speaking Freely is July 18 – best place to meet if you’re feeling a little anxiety. In this room at 8.00pm Eastern https://www.gotomeet.me/AnswerCancer    Next Vets Group for healthcare and benefits navigation – Thu July 25 @ 8.00 pm Eastern https://www.gotomeet.me/AnswerCancer
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!

Editor’s Pick: We learn about focal zapping (bj)

Topics Discussed

Newbie not sure whether to attend AS, Low/Int. or both; Post radiation/ADT treatment schedule; Comparison of radiation treatment options; SBRT and fertility; When should you get a PSMA PET scan test?; Understanding biopsy results; Preparing for IRE ( electrical focal zapping) and SBRT clinical trial – is this the best option; Pros and cons of participating in a clinical trial; PCRI Conference — largest patient centric conference in the world.

Chat Log

AnCan – rick · 8:24 PM
Gents – please feel free to share your emails with each other to follow up
AnCan – rick · 9:11 PM
IRE ???
AnCan – rick · 9:16 PM
Electroporation – electrical focal zapping

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 27, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 5, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 5, 2024

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
Did you miss Clinical Trials 101: Common Myths and Facts – find it at https://ancan.org/webinar-clinical-trials-101-common-myths-and-facts/
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Join our other free and drop in groups:
Editors Pick: Crazy increases in PSA suggests therapy is not working; Dr. Bob GRHS (rd)
Topics Discussed
Dr. Bob GRHS’; low level mCRPC – what next?; fermented foods; starting olaparib with somatic BRCA2; chemo holiday for our foamy gland man; long resistant gent starts mono or double HT in the Fall; Vit D and Metformin discussion; heart is solid – PSMA to follow; erratic, fluctuating PSA suggests Tx not working – needs 2nd opinion; Decipher not useful for this situation; stopped abi and prednisone on his schedule + psych issues; 2 gents start start HT for 1st time; Intermittent HT discussion; restarting mono LHRH.
Chat Log
  • Adam

    sent: 7:15 PM

  • Adam

    sent: 7:56 PM

    Yes.

  • Adam

    sent: 8:01 PM

    HAHA. Yes. That’s exactly what I was thinking. But yes. The older crowd. I really want to make the under 60 zoom Thursday but I’ll be playing taxi cab during that time. Sigh.

  • Alfredo – in Houston

    sent: 8:05 PM

    https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/

  • Alfredo – in Houston

    sent: 8:14 PM

    CALCIUM SCORE PRESENCE of CAD (coronary artery disease) O No sign of CAD 1-10 Minimal signs of CAD 11-100 Mild signs of CAD 101-400 Moderate signs of CAD 401+ Extensive signs of CAD

  • Frank Fabish Columbus OH

    sent: 8:33 PM

    Thanks for listening guys. Got to run. thanks for the dialogue.

  • Michael McCabe

    sent: 8:42 PM

    Got to go guys, see everyone at next meeting

  • Steve Roux, MI

    sent: 8:43 PM

    GREAT Meeting guys – I need to take my rescue puppy out for a walk. Goodnight all!

  • THOMAS M

    sent: 8:52 PM

    I have used the “Cancer Care” booklet from the FLCCC Alliance, Dr. Paul Marik, MD. The discussion about vitamin D brought this to mind. It suggests repurposed uses of various supplements and pharmaceuticals for cancer treatment. Its worth a glance.

  • Gary P

    sent: 8:55 PM

    https://betterdayscounselingllc.com/

  • John A

    sent: 9:10 PM

    gotta stop now guys see you next week

  • Matt M

    sent: 9:12 PM

    gotta go boys, have a great week! I’ll be on some next onens…..

  • THOMAS M

    sent: 9:22 PM

    Time to scoot. Thanks all.

  • Dr. Jeff

    sent: 9:39 PM

    gotta sign off. Past my bedtime. see everyone next week

  • Alfredo – in Houston

    sent: 9:49 PM

    Thank you everyone, I learn something every time.

  • Alfredo – in Houston

    sent: 9:49 PM

    goodnight

Preserving Fertility for Men with Cancer: Options and Overcoming Barriers

Preserving Fertility for Men with Cancer: Options and Overcoming Barriers

Preserving Fertility for Men with Cancer: Options and Overcoming Barriers

By: Mark Perloe

For men facing cancer treatment, the risk of infertility is a major concern that is often overlooked. While fertility preservation options exist, studies consistently show that a significant proportion of patients are not adequately informed or offered these choices by their healthcare providers before undergoing potentially sterilizing cancer treatments.

The main barriers to men being aware of fertility preservation include limited knowledge and training among providers, discomfort discussing the sensitive topic, low referral rates to reproductive specialists, logistical challenges, time constraints before treatment initiation, perceptions about appropriateness based on prognosis, and patient-related factors like lack of awareness and financial concerns.

It is crucial for men to understand their options for preserving fertility, which include:

Sperm Cryopreservation (Sperm Banking)
This standard and most effective method involves collecting and freezing sperm samples before treatment for future use through assisted reproductive techniques like intrauterine insemination (IUI) or in vitro fertilization (IVF) with intracytoplasmic sperm injection (ICSI). It is well-established and successful for post-pubertal males.

Testicular Tissue Cryopreservation
An experimental approach where testicular tissue is removed and frozen before cancer treatment. The frozen tissue may potentially be used later to extract sperm stem cells for reimplantation or to induce in vitro spermatogenesis. However, no live births from this method have been reported in humans yet.

Gonadal Shielding
Protecting the testicles from radiation damage by using lead shields during radiotherapy. Its effectiveness is limited by patient anatomy and radiation field requirements.

Sperm Retrieval
For males who cannot produce a semen sample, sperm can be surgically retrieved from the testicles or epididymis through techniques like testicular sperm extraction (TESE) or percutaneous epididymal sperm aspiration (PESA). Retrieved sperm can then be used for IVF/ICSI. This invasive option is appropriate when a male cannot produce a semen sample due to conditions like anejaculation, obstructive azoospermia, or prior to puberty.

While sperm cryopreservation is the most established and successful fertility preservation method, sperm retrieval combined with IVF/ICSI can be an option when cryopreserved sperm is unavailable or inadequate. However, IVF/ICSI is more invasive, costly, and has lower success rates compared to using cryopreserved sperm for insemination.

Overcoming barriers to awareness and utilization of fertility preservation options requires improved education and adherence to clinical guidelines from organizations like the American Society of Clinical Oncology (ASCO) and the American Society for Reproductive Medicine (ASRM). Establishing formal fertility preservation programs with multidisciplinary teams, patient navigators, and educational initiatives can help ensure that men with cancer have the opportunity to make informed decisions about preserving their fertility before undergoing cancer treatments.

For questions, please contact Mark Perloe at mperloe@outlook.com

Webinar: Clinical Trials 101: Common Myths and Facts

Webinar: Clinical Trials 101: Common Myths and Facts

Are you ready to get the inside scoop on clinical trials? Get ready to delve deep with former clinical trial nurse coordinator Marni Tierno. We know it can be a complex and overwhelming topic, but don’t worry – we’re here to break it down in a way that’s easy to understand.

Also featuring the vast professional experience of Wendy Garvin Mayo, we’ll tackle the myths and misconceptions that often surround clinical trials, giving you the facts and insights you need to make informed decisions.

Whether you’re a patient, carepartner, or simply curious about clinical trials, this webinar is for you! Our aim is to empower you with a deep understanding, allowing you to make the best choices for yourself or your loved ones.

Some of the topics we will cover include:

  • Description of the types and phases of clinical trials
  • Examples of pivotal clinical trials that have changed how we treat cancer
  • What to expect when participating in a clinical trial (including potential risks and benefits)
  • Addressing common questions about clinical trial participation

and more!

Watch here: (closed captioning is provided for this webinar, click the CC button at the bottom next to the gear.)

 

To view the slides from this webinar, please click here.

 

Special thanks to Bayer, Novartis, Johnson & Johnson, Foundation Medicine, Myriad Genetics, Telix, and Blue Earth Diagnostics for sponsoring this webinar.

               

 

And very special thanks to Illumina and Collaborative Cancer Care for letting us have two of their absolute best people present for us!

illumina.    

 

To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.

Helpful tips to be Your Own Best Medical Researcher

Helpful tips to be Your Own Best Medical Researcher

Helpful Tips to be Your Own Best Medical Researcher

AnCan asked Mike Wyn, a valued AnCan Frequent Flyer and intrepid researcher, to provide a little navigation to those who are new to research… as well as useful tips for some old hands like myself. I’ve already gathered some research nuggets from Mike’s wisdom… thank you, Mr. W.

Here are a few tips ensure the medical information you are researching is reliable and accurate

Book Research

Check the publication date: authors may need at least a year to write a book, and the average time between a book’s acceptance and its publication is typically between 9 to 12 months. Hence, the data may already be outdated when it hits the shelves

Professional Presentations

Check the credentials, disclaimers, and disclosures of the presenters. Who is the author? What is the sponsoring organization providing the information? Preferred sources are from reputable institutions, such as universities, hospitals, or government health agencies.

Google Web Searches

Use command “site:” to limit you search to top-level domains like .gov, ,org and ,edu.  For example, type: latest NCCN guidelines for prostate active surveillance  site: .gov OR site: .org OR site: .edu

Be cautious with .com sites unless they are from recognized and credible entities. Medical databases such as PubMed, Cochrane Library, and Google Scholar are good sources for cross-referencing scientific research.

Articles, Online Posts

Check articles, online posts, videos etc. for their sources, including scientific studies, medical journals, or clinical trials. Information from peer-reviewed journals is typically more reliable than content from non-peer-reviewed sources. Poor reviewed means that other people similarly qualified to the author have reviewed teh article adn provided comments.

Anecdotal Evidence

Anecdotal evidence is information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:

  1. Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.
  2. Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.
  3. Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.
  4. Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.
Medical Trial Reports

The phases of medical trial studies cited by published medical papers are:

  1. Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’  means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice.  Then studies move on to humans…
  2. Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.
  3. Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..
  4. Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.
  5. Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Statistical Terms

Some terms regarding statistical data cited in medical journals are explained as follows:

  1. N =  the number of participants: be wary of studies with a very low N.
  2. HR = hazard ratio:  HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR<1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.
  3. CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
  4. P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is <=0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested..

 

Editor:  Advisory Board Member and The Active Surveillor, Howard Wolinsky reminded us of another presentation AnCan presented a few years back A Layperson’s Guide to Reading Medical Research – watch it!

Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 27, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 23, 2024

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 23, 2024

UPCOMING AnCan CLINICAL TRIALS WEBINAR

Clinical Trials 101: Common Myths and Facts Date:

Wednesday July 31, 8.00 pm Eastern

Click here to register https://tinyurl.com/ancanct

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you’d like to see the AnCan Moderators picks of the best at ASCO24, visit https://ancan.org/patient-highlights-from-the-2024-asco-conference/ for links to slides and to the recording.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Join our other free and drop in groups:
Editors Pick: The passing of Jim Barnes; ADT know-how from Richard Wassersug (bn)
Topics Discussed
Passing of Jim Barnes, age 65 — his mutations (P53 and PTEN) may have made actinium/lutetium treatments ineffective; a delicate spot radiation gets moved earlier; after five years of remission, PSA drifts just high enough to be worrisome; blood clots in lungs after his final Provenge infusion  — “I actually could feel bumps”;  scary bright spot in his PSMA PET appears to be a prostate cyst; OK to start Casodex and Lupron at the same time?; a mini-webinar from Dr. Wassersug on ADT preparedness; Dr. W says metformin does not appear to forestall ADT-induced diabetes; and he updates us on his still-unproven but intriguing estradiol treatments — note, please, that they’re not a way to avoid ADT symptoms!; new team is eyeing PSA before starting radiation; testosterone still trailing after 2-year treatment holiday; at Carbone, we like Dr. Lang — also take advantage of Carbone’s palliative care, and be honest with them.
Chat Log
Richard Fiske · 6:30 PM
Sorry; have to leave.
AnCan – rick · 7:07 PM
PROMISE – https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
AnCan – rick · 7:11 PM
https://www.lifeonadt.com
AnCan – rick · 7:38 PM
DR W discussion with AnCan’rs  https://ancan.org/talking-estradiol-e2-for-recurrent-and-advanced-prostate-cancer/